Simon’s World.
When we first became legal guardians to our 6 year grandson, Simon, who is challenged with high functioning autism, we thought we understood a few things about the condition. We knew we would need buckets of patience and even more buckets of love. We knew our lives would change, but in our late forties, we felt we had a degree of wisdom, experience and determination. We held a confident position in the social network around us. We had read all the books, been on a course, prepared our home for the journey ahead and we faced the future with confidence. We had been asked to do it all again, to nurture and raise a small child and we relished the thought.
So here we are five years down the line. Simon is 11 years old and we were right. We have needed buckets of patience and even more buckets of love. We have needed wisdom, experience and determination. Now we understand a thousand things about autism. We don’t understand a million things more.
If we all live in our own bubbles, with varying degrees of shining transparency, sometimes joining with other bubbles and sometimes breaking apart, Simon’s bubble is opaque, psychedelic and rubber, bouncing off of other bubbles as he goes through life and we live in the bubble with Simon. Our own bubbles have long since floated away.
The New Bed
So there it stood. A symbol of Simon’s new life ahead with us. A beautiful pine cabin bed against his newly decorated bedroom wall. A pull out desk underneath for those evenings spent together guiding Simon with his homework, the art chest filled with gleaming pencils and sheets of coloured paper, glue sticks and safety scissors tucked to the side. A chest of drawers filled with neatly folded little jumpers, shorts and underwear. All ready to be worn for the first time. A little wardrobe tucked under the end of the bed with freshly ironed school shirts, jackets and trousers. A little bookcase, with ordered lines of children’s books, The BFG, Matilda, Robinson Crusoe and the Famous Five all waiting to take Simon to a land of fantasy and adventure. On top of the bed, a bright cheerful matching bed set, a row of teddies with arms reaching over the top rail waiting to welcome Simon to his new world.
Lesson 1.
Simon’s anxiety levels shot up like a rocket as he stepped into the room. NEW. Everything is NEW. NEW means DIFFERENT. DIFFERENT means UNKNOWN. Simon doesn’t do unknown. Simon doesn’t do excitement. Excitement brings a longing to get on with things, to see what happens next. Simon only lives in the moment. No past, no future…because those places are accessed through understanding, imagination and choice. Keep it safe. Keep it present.
‘Do you like your new bedroom Simon?’ We waited for him to take the room in, to start exploring his little Empire. We waited for the moment when we could congratulate ourselves for making Simon feel safe, secure and loved. Simon was staring up into a corner of the room, studying the paintwork on the new coving put there by his granddad. ‘Move it’ he said pointing to the bed without taking his eyes of that blasted ceiling. ‘Push it in the corner. Push it’.
Simon likes boxes. Boxes have walls to hide behind. Boxes are safe. Simon’s bed was now boxed into the corner. He climbed on the bed and scrabbled around pulling out the cosily tucked in quilt cover and hurling it onto the floor in a heap. ‘Don’t like pictures on my bed’ he snapped. ‘Get me black’.
I can’t remember our reactions at that moment. We were probably standing with our mouths open. We had moved from being occasional babysitters, laughing at Simon’s little peculiarities and foibles, to becoming full time carers being taught for the first time that we now lived on Simon’s terms. We had packed our bags and emigrated. We were all on strange territory.
Simon busied himself piling up a fleece blanket, his dressing gown and all his teddies on the open side of his bed. We were ordered to pull the blinds, close the curtains and put the lamp on at 3 o’clock in the afternoon. Simon lay staring at the coving. Tracing it around the ceiling of his room. Continuums are good, continuums are safe. You don’t have to worry about what happens when they end.
The morning after.
My bare feet stepped straight into a soggy patch as I crept into Simon’s room in the early hours of the next morning. A dark stain just inside the door on his new beige carpet…practical colour…doesn’t show up marks. The furthest edge of the stain disappearing under the messy pile of his books pulled from the bookcase in haphazard fashion. The bright colours of numerous pairs of underpants dotted around the pile, his underwear drawer hanging precariously from its housing. Coloured pencils arranged in long snakes on the floor, furious black scribbles on the wall by his bed.
My husband David, bleary eyed, watched me dabbing at the carpet, a large pile of urine soaked toilet paper piled on top of the dripping copy of Robinson Crusoe. ‘Its alright’ I assured him. ‘Its just the first night. He’ll get used it’. David moved across to tuck Simon in needlessly as he was fully submerged under the plainest quilt cover we had been able to find at short notice. ‘Look at this’ he whispered pointing to the guard rail around the top of the bed. New bed, new life. Simon had marked out his territory. Perfect indentations of his teeth ran around the entire length of the guard rail in the soft pine, his very own continuum, Border Control in Simon’s world.
